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Mari, every time you post about not being able to get insurance to cover the care you need I just feel sick to my stomach. Shouldn't you qualify for Medicare or Medicaid right away?

ha! You would think so however I can't make more than $150 a month in order to qualify for medicaid in a two family home and I have to be on disability for 2 years before Medicare kicks in. For well over a year I was only getting my child support which is $300 a month and I could not qualify for medicaid because I was $150 over the limit!

Terrie, my seizures actually started out as night seizures. For the longest I didn't know what was happening I would wake up in the morning simply humiliated because I was a 40 year old woman and I had wet my bed! I didn't even mention it to my doctors for a long time. I started buying nighttime pads and cry every morning that it happened. On my first appointment with the neurologist (after my first tonic clonic at work where they called an ambulance) one of the questions on the paperwork asked "uncontrollable bladder release". I started crying right then and there! For the first time I could see a medical reason for this instead of me just being a crazy woman who wets the bed!

MariSuccess is not final, failure is not fatal: it is the courage to continue that counts.

I know this thread is about seizures but I really want to point something out since we are discussing CNS. Although I am not a doctor and I cannot diagnose anyone or tell you what meds you need I think it is REALLY important to make sure that SLE patients take an asprin a day unless told differently by your doctor. One of the things that often happens with SLE patients is that our blood begins change in texture. We don't actually call it thickening but it begins to clot easier which can lead to strokes and all kinds of other health problems. The syndrome is called APS and it is something you can have and not even know it. Looking back on my life (PL - Pre Lupus) I believe I have had APS for decades.

Please take a moment on your next doctor visit to discuss taking an Asprin a day. Do not start it on your own, without doctors approval, but please put this at the top of your list for the next visit. We have enough going on and we don't need clots/strokes that can be avoided

MariSuccess is not final, failure is not fatal: it is the courage to continue that counts.

ha! You would think so however I can't make more than $150 a month in order to qualify for medicaid in a two family home and I have to be on disability for 2 years before Medicare kicks in. For well over a year I was only getting my child support which is $300 a month and I could not qualify for medicaid because I was $150 over the limit!

Terrie, my seizures actually started out as night seizures. For the longest I didn't know what was happening I would wake up in the morning simply humiliated because I was a 40 year old woman and I had wet my bed! I didn't even mention it to my doctors for a long time. I started buying nighttime pads and cry every morning that it happened. On my first appointment with the neurologist (after my first tonic clonic at work where they called an ambulance) one of the questions on the paperwork asked "uncontrollable bladder release". I started crying right then and there! For the first time I could see a medical reason for this instead of me just being a crazy woman who wets the bed!

How do you live on $300 a month?!? That's just crazy. The whole system is so messed up.

My daughter has the same problem at night. Did they actually "catch" you having a seizure at night or did they diagnose it based on your history? Her EEG was normal, but she didn't fall asleep during the test. She has other neuro problems, so it's hard to sort things out.

We lived on $300 a months for close to a year. Let me tell you... you figure out the difference between what you want and what you need really fast!

As for the seizures, I had the 30 min awake one while i had insurance and they didn't catch anything. I was sent home with one attached to my head for 3 days. Sadly, I had a seizure in the chair as they were hooking me up but while they actually had it turned on! LOL For a long time I worried about why they were not finding anything and FINALLY a wonderful ER Dr said to me "Of course they are not seeing them on a regular EEG. Many Lupus patients do not have the typical seizures, meaning an electrical problem. Lupus patients often have problems because of inflammation and when things get inflamed it slows the blood flow to whatever part of the brain and then they have a seizure. By the time help arrives or they get to a hospital it is over." It made complete sense! It also helped explain why, on my MRI, they spoke of a blood flow issue at the base of my brain (left side).

So to answer your question, No, they never actually got it on record. Between witnesses and other types of testing (and the fact that seizure meds worked) I am diagnosed with having Lupus with seizures and a whole other list of things. I can't speak for anyone else but for me the seizures are simply a part of the bigger picture which is CNS involvement. I have 2 neurophych exams and my IQ went down on each. I won't begin to give all the examples of the CNS and it took me forever to find a doctor that would look at me and say "Of course the seizures are from the Lupus!" when everyone else said "oh these are two separate issues". I know it is difficult but keep pushing forward and standing up for what you know is going on. You are the only advocate you have for yourself and for your daughter!

MariSuccess is not final, failure is not fatal: it is the courage to continue that counts.

I know this thread is about seizures but I really want to point something out since we are discussing CNS. Although I am not a doctor and I cannot diagnose anyone or tell you what meds you need I think it is REALLY important to make sure that SLE patients take an asprin a day unless told differently by your doctor. One of the things that often happens with SLE patients is that our blood begins change in texture. We don't actually call it thickening but it begins to clot easier which can lead to strokes and all kinds of other health problems. The syndrome is called APS and it is something you can have and not even know it. Looking back on my life (PL - Pre Lupus) I believe I have had APS for decades.

Please take a moment on your next doctor visit to discuss taking an Asprin a day. Do not start it on your own, without doctors approval, but please put this at the top of your list for the next visit. We have enough going on and we don't need clots/strokes that can be avoided

Mari,

How you said the seizures and wetting yourself made you cry, all that came out of my mouth as i still living with my parent's when it started was sorry and the full embarressment was unbelieveable until i saw the doctor and he said yes this occurs, it's when the fits are to much and by wetting apparentley with grandmal is also a relief with the seizures and when you froth there's the worry of choking, those seizures alone have put me in 3 coma's, they can be very dangerous.

I did'nt want the Asprin but the rheumo said you've got to take it because of the clotting and strokes and i don't feel no different taking it but i do recommend to other's like Mari's said it's best to add it to the list to see your doctor about.

I've had DVT bad and it's no fun the pain is terrible and then there's the left over scaring and damage the clots do and then i had two major strokes where i was completley paralised took my speech the lot and it took 4yrs to get me walking again and to all member's out there who have had them or have'nt, listen to Mari's advice because once a major stroke happens you've lost you independance to life and rely on other's and then your lying there hoping a miracle will bring your body back in some way of living a normal way of life again but without the help of others.

Hi All first of all thankyou all so much for all the support and information it has been very useful.Update on Alan is no-one at the hospital think the seizures are Lupus related they did a CT scan and it was "clear" he is to have an MRI scan but not till friday 3 more days away(shocking) .He has had just over 40 seizures since midnight on Sunday this is now 5.30pm Tues he is exhausted (so am I) ive been "sleeping" on a chair at his bedside now for 2 nights im exhausted also but I cant leave him he breaks his heart crying everytime he has one he's terrified and so am I as they are so violent.The doctors have also said no way is this epilepsy as he is fully conscious during them and the CT scan would've shown if it had of been Epilepsy he was already on 40mg prednisolone so they are giving him Diazipam straight into the vein it doesnt stop the seizures but they arn't quite as violent as they've been.Love to all and thanks once again M.x.

Mary before i reply to your messages read this info because i have Temporal-lobe epilepsy which sends me in Autissum seizures but i'm still awake but in a trance and i also suffer with Todds-paralasis, there are seizure's where your still awake having one.

Conscious Seizures

Partial seizures involve epileptic activity in just a part of the brain. They can be divided into simple partial and complex partial. In a simple partial seizure you are fully conscious. You remain fully aware of your surroundings. However this does not mean that you are able to stop or control the symptoms.

In a complex partial seizure you partly lose consciousness and you are not aware of what you are doing. Because of this, you may not remember the seizure afterwards, or your memory of it will be unclear.

The symptoms that you experience depend on which area of your brain is affected by epileptic activity.

The areas of the brain
The temporal lobes – responsible for many functions, including hearing, speech, smell, memory and emotions
The frontal lobes – responsible for many functions, including movement, emotions, memory, language, social behaviour and sexual behaviour. They are also considered to be home to our personality.
The parietal lobes – deal with our bodily sensations.
The occipital lobes – responsible for our vision and how we see things.
Follow these links for more detailed information about different types of partial seizure.

Temporal lobe seizures
Frontal lobe seizures
Parietal seizures
Occipital lobe seizures
Todd’s paralysis or Todd’s paresis
Rarely, following a partial epileptic seizure, it is possible to experience temporary paralysis in the area of the body that was involved in the seizure. This can last from minutes to hours.

Hi All first of all thankyou all so much for all the support and information it has been very useful.Update on Alan is no-one at the hospital think the seizures are Lupus related they did a CT scan and it was "clear" he is to have an MRI scan but not till friday 3 more days away(shocking) .He has had just over 40 seizures since midnight on Sunday this is now 5.30pm Tues he is exhausted (so am I) ive been "sleeping" on a chair at his bedside now for 2 nights im exhausted also but I cant leave him he breaks his heart crying everytime he has one he's terrified and so am I as they are so violent.The doctors have also said no way is this epilepsy as he is fully conscious during them and the CT scan would've shown if it had of been Epilepsy he was already on 40mg prednisolone so they are giving him Diazipam straight into the vein it doesnt stop the seizures but they arn't quite as violent as they've been.Love to all and thanks once again M.x.

Hi Mary,

Thanks so much for getting back to us and letting we know how things are going with Alan and 40 seizures is such alot within a short time.
Being that they've found nothing with the CT scan then the MRI should show something but if not they should run two EEG tests, one while he's awake and one where he's sleeping it shows how attactive the currents of electricity in the brain are.
Mary this lot will shock Alan it did me for years plus the seizures do put alot of stress onto the body in general. They've got him on Valium to carm the nervous system down and he'll be slightly tied with how they're feeding him with the valium, as it gives small dosages at a time.

If they don't find nothing with the tests you've mentioned and also what i mentioned and they can't find nothing, this is a suggestion you don't have to follow it but you could ask either the specialist who's treating him or your GP to send him to (MR Tim Betts at the Queen Elizabeth, Birmingham) he's one of the top 6 surgeon's in the UK for epilepsy, he's a brilliant man.

I wish Alan and yourself the very best, as you must be totally worn out yourself.